Friday, April 13, 2012

Worthy organizations (and one unworthy)

As a blogger I am approached by organizations who find me on line somewhere - sometimes my blog and sometimes through Twitter. Most of them I ignore but occasionally I like them and will blog about them. This is the case this morning.

First I found (I think I found this one instead of it finding me) the Informed Medical Decisions Foundation (www.informedmedicaldecisions.org). Their name says it all. They '...believe that the only way to ensure high quality medical decisions are being made is for a fully informed patient to participate in a shared decision making process with their health care provider.' This goes back to the basics of bring a list of questions to ask your doctor, give your input to your doctor, and don't sit there like a bump on a log listening to what your doctor says.

I pride myself in being the problem patient in that I go in and tell my doctors what I want. The other day I had an appointment with my back doctor. I don't think my back pain meds are working, they are not a preferred brand name drug so they are expensive, I don't like its side effects, and because I am taking it, I can't change some other meds I want to switch as well. I told my doctor this (little list of whines) and he gave me something new to try for two weeks. If it seems to be working, I can then taper off the one I don't want and stick with the one I want. But I got what I wanted in the long run.

The next organization (this one discovered me) is 'Is My Cancer Different' (www.ismycancerdifferent.com) which focuses on individualized cancer treatment. One of the first things you learn as a cancer patient is that everyone's cancer is different. Which is why when someone says to me that their cousin's hair dresser's dog walker's neighbor's uncle had a specific cancer treatment protocol and asks why I didn't have it, I tend to go from annoyed to fairly ticked off at their stupidity and insensitivity. Individualized cancer treatment is the next step in treating cancer by looking at genetics, the individual, and their circumstances.

I have a group of women friends who were all diagnosed at approximately the same time with the same stage of breast cancer and had relatively the same course of treatment. But we are all different. One has since passed away, one has had a second cancer diagnosis, and the rest of us are coping with a range of health issues. So I tell these other people nicely to SHUT UP and I will support individualized cancer treatment.

Then there is another organization who managed to mildly tick me off. They emailed me and asked if I would blog about their type of cancer of which I know nothing - complete with their guidelines on what to say. I sent them back a reply - which I thought was above and beyond because I could have just deleted it - and politely said no thank you as I don't blog about things I don't know about or that don't interest me. They asked again and said they could write the blog post for me. I wrote back and said 'Let me just say this again. No. Thank you.'. I haven't heard back. If they do ask again, I might be forced to be a bit more drastic.

They reminded me of the door to door political guy who stopped by yesterday afternoon when I was out in the yard trying to get the cat back inside. I had to tell him three times I had something on the stove and no I wouldn't give him money - the cat could have been cooperative and come back sooner so I could have run inside.... What is wrong with the word no?

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About Me

Married to the most wonderful man.
My list of ailments so you can keep up: slowly healing left sprained ankle, right knee partially torn ACL, left knee osteoarthritis, bursitis both hips, lymphedema issues left arm, tennis elbow right arm, degenerating disks in my back - a chronic issue that cannot be repaired by surgery and only the symptoms can be treated and some weird neuro muscular issues that causes all kinds of pain in my upper back. Oh, and then there is that cancer thing twice now... But I'm still here.

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If you want to follow my story and ramblings through the medical world, you need to start reading the oldest post first which is at the very bottom or you can jump to it by going to June 2007 and look for 'My Big Announcement'. I started this blog so I could keep my friends and family up on my dealings with breast cancer but now it has evolved into my take on the medical world as well as my medical ups and downs. I have not listed my email address but if you know me, you know how to contact me. I always welcome emails. You can also find me on Twitter @carolinemfr and on Facebook. Otherwise, feel free to leave a comment!

But no I do not write about suggested topics or other people's blogs or other ailments so do not bother asking. Sorry.